A Book Review on Alzheimer's Disease

In researching Alzheimer's Disease, attempting to learn all I can about the disease, and how to care for those that have it, I have come across numerous books, articles, and blogs.  In November, I received an Amazon Kindle for my Birthday, and immediately started downloading any book I found concerning Alzheimer's Disease.  The first book I downloaded and read is Alzheimer's Finding the Words, A Communication Guide for Those Who Care  by: Harriet Hodgson.

     "Much like a telephone, speech depends on
      transmission and  reception.  If there are
      problems on the line - Alzheimer's Disease - 
      the message is garbled.  The sender and receiver
      are having entirely different  conversations."

In Alzheimer's, Finding the Words Harriet leads us on her journey with her Mother, Mabel Clifton Weil whom suffers from Alzheimer's Disease.  In the beginning stages Harriet and her mother lived in two separate states, and Harriet attempted long distance Care-giving, this became more and more difficult with every passing day.  Harriet was then forced to move her mom to a nursing facility near to where Harriet lives so that she could properly care for her mom.

In her book Harriet briefly touches on multiple facets of Alzheimer's and how to communicate with those that have it.  Starting with defining Alzheimer's Disease, early warning signs, loss of communication skills, stages of the disease, to tips and techniques caregivers can use to communicate and help their loved ones. Through the multiple subjects she touches on, Harriet will pinpoint a problem, give an example of a situation she had experienced with her mother, then site a reference from a particular book or professional in the field on how they recommend dealing with the issue.  Followed by methods that has worked or not worked for her.

I completely enjoyed the fact that she touched on such a wide range of subjects, however they were brief and left me wishing for more information on certain areas of concern.  It is for this reason that I would give her book 4 out of 5 stars.  I would highly recommend this book to anyone who has found themselves caring for a loved one with Alzheimer's, yet found themselves lacking the knowledge to do so.

Have you read this book?  Add your comments below.

Teleconference on Caregiving for Dementia

Today I had the privilege to listen in on a teleconference by Carole Larkin on the Alzheimer's Foundation of America's Care Connection.  Carole Larkin MAG, CMC, CAEd, QDCS, EICS, is a Geriatric care manager who specializes in helping families with Alzheimer’s and related dementia issues. She also trains caregivers in home care companies, assisted livings, memory care communities, and nursing homes in dementia specific techniques for best care of dementia sufferers.

On the second Thursday of every month, the Alzheimer's Foundation of America's Care Connection holds a teleconference with a different guest speaker that caregivers like myself, can call in and listen to a qualified professional speak, and ask questions concerning our loved one.  You can connect with this teleconference by dialing toll free 1-877-232-2992 then entering guest code 271004#.  This conference is held at 1 PM Eastern time. 

Today's topic was titled Candy Bars in the Shower and Other Tips and Tricks to Manage Activities of Daily Living .  You can find recorded archived calls at http://www.alzfdn.org/AFAServices/careconnection.html.  Carole provided allot of useful and interesting information, I recommend that you connect to the above link and listen to her speech.  The information ranged from dealing with the repetitive behavior of Alzheimer patients to assisting with eating and bathing, as well as incontinence issues. 

Conversations with Alzheimer

Saturday December 4th, it's 8:08 AM,  I awaken to my oldest daughter coming downstairs.

Oldest Daughter - "Brian, Pawpaw is awake and trying to go somewhere, he said he is waiting on you to take him.  I asked him where he was going and he would not tell me, he said he will only tell you.

Brian - "OK, tell him I am on my way."

I quickly dress and go upstairs, I walk into Bill's room and he is sitting on the side of his bed with his pants halfway up to his knees, sitting in a puddle of pee.

Brian - "What's going on Bill"?

Bill - "I don't know, you tell me."

Brian -  "Well, your Granddaughter told me that we were going somewhere, where are we supposed to be going"?

Bill - "I don't know, you tell me."

Brian - "It is 8:00 o'clock in the morning, and we have no plans to go anywhere.  Where did you think we were going"?

Bill - "I don't know, you tell me."

Brian - "Is something wrong"?

Bill - "I don't know, you tell me."

Brian - "Are you feeling alright?  How do you feel right now"?

Bill - "I don't know, you tell me."

Brian - "Well, do you want to get up, shower, and get something to eat, or do you want to get cleaned up, change clothes,  and go back to bed"?

Bill - "I don't know, you tell me.  Your the brains of this outfit."

Brian-  "Are you still sleepy and want to go back to bed"?

Bill - "I don't know, you tell me."

Brian - "Well, how about you get up, we will get you cleaned up, dressed, and we will drive into town, and get you a biscuit."

 #1) I know by now that when he is set on going somewhere, we need to go somewhere.

 # 2)  When he is acting this way, and is lost in what I call "Al's World" that one way to bring him back into my world, is to change his environment, by getting him out of the house awhile.  I do not know why this works, but anytime he gets agitated, gets lost in "Al's World", having hallucinating, or delusions, that getting him out of the house for even just 15 minutes changes his mood dramatically. 

Bill - "I don't know, you tell me.  Your the brains of this outfit."

Brian - "Are you hungry"?

Bill - "I don't know, you tell me."

Brian - "OK, get undressed, and I will get your shower set up."

Bill - "OK, your the brains of this outfit."

I get his shower ready, and go back to his room, and he is still sitting in the same position, pants halfway on.

Brian - "Bill, what's wrong"?

Bill - "I don't know, you tell me."

Brian - "I have your shower going, I need you to get undressed." 

Bill now proceeds to get undressed and moves to get into the shower.  About this time, my oldest daughter yells out, "Bye, I'm leaving now, love you."  I respond in kind. 

Bill - "Who is that"?

Brian - "Your oldest Granddaughter!"

Bill - "Where is she going, to work?"

Brian - "No, she doesn't work, she is going to go Christmas Shopping."

Bill - "How is she going to go shopping if she doesn't work"?

Brian -  "Well, she is going with her boyfriend,  I guess he is paying"?

Bill - "How is he paying"?

Brian - "He has a job."

Bill - "He is going to spend all his money just on a Christmas Present."?

Brian -  "You got me,  It's his money, It's up to him how he spends it."

Bill - "Well, I will be damned, If I will walk the streets like that for that kind of money"!

Brian - I could not respond to that,  I just did not know what to say, to that statement.

We then got him showered, dressed, his room cleaned up and bed changed.  We drove into town to pick up some refills for his prescriptions and grabbed some biscuits.  All behavior and conversations were normal for the most part, until we were halfway home. . .

Bill - "I was saving that for my boys!"

Brian - "Saving what"?

Bill - "I was saving that ranch I got for the future of my boys.  I got a 3000 acre ranch for my boys,  my ole lady, and my two daughters.  I got 3000 acres down in that holler right over there!"  Long Pause,  "You got that Boy"?

Brian - "Yes Sir, I got that."  I know that Bill has never owned land other the houses he has bought and lived in since he started his family over 40 years ago. 

All of this has taken place in the first hour and a half to two hours since he woke up this morning.  We arrive home, and his behavior has been as normal as any behavior of a person his age without Alzheimer's.  We have been home for four and a half hours now. 

Recommendations and Lessons Learned

• When Bill is acting out of the normal realms of behavior, I have found that changing his environment quickly changes his mood.
• Do not argue with Alzheimer's, it can and WILL make things worst.  Try your best to keep up with the conversation by agreeing with, or just "playing along" with whatever delusional behavior they are experiencing at the time. 
• It is not important when he is clearly discussing unreal or untrue facts.  It is only important that your there to hear them, and your there to keep them safe and secure. 
• Conversations, moods, and behavior can change in the blink of an eye.  For example this morning, the only responses I got out of Bill where "I don't know, you tell me." and ""I don't know, you tell me, your the Brain's of this outfit."  Up until my oldest daughter yelled to us that she was leaving.  Then his responses and behavior started changing.

Happy Caregiving

Happy Thanksgiving everyone!  Before I share my day with you, I would like to preface today's story by telling you that what you are about to read contains some rather descriptive and disturbing rhetoric.  This is not meant to be anything other than the true, accurate, difficult aspects of Care giving.  This is a rare, but very real occurrence,  that Caregivers must deal with on occasion.  When I started this blog, one of my primary goals was to describe what a Caregiver goes through on a day to day basis when working with someone with Alzheimer's Disease.

Today as a family we were going to visit both my family and my wife's family for Thanksgiving.  My family was going to gather at my Cousin Scott's house, that was one hour and ten minutes away.  Scott just returned home three weeks ago from Afghanistan where he was serving our country in the U.S. Army Reserve.  His wife served at home anxiously awaiting his return with her daughter, one son a U.S. Marine that had already served a year in Iraq and a year in Afghanistan, while her oldest son is still active duty U.S. Navy.  I have not seen anyone in my extended family in over two years, my two brothers I have not seen since May.  My mother I have seen several times this year, so we were looking forward to getting together with them this year.  After we left their house, we were going to see my wife's side of the family which was gathering ten miles from where I live. 

We started stirring this morning around 6 AM, so that my three daughters, and wife could shower, dress, apply their war paint, I could shower and dress, and get Bill showered, dressed and ready for a 10 AM departure.  We were to arrive at my cousin's house at 11:15, and we were responsible for bringing drinks.  At approximately 10:30 this morning, Bill turned to me and said "I need you to stop at the next restroom, I have to go"!  O.K. I replied,  At the next light I turned to him and asked if he had to go One or Two.  "Two he replied."  The light turned green and I sped to the nearest restroom.  We stopped at the Shell Gas Station at the next exit and was able to get Bill out and into the store where we rushed to the restroom and stood in-line.   There was one man in the restroom, and another waiting, the woman's restroom was occupied and had three other ladies waiting to get inside.  

Waiting outside the restroom, the first man exited and the second man quickly went inside and locked the door.  Standing there,  I watched as Bill was showing signs of stress,  very much like how retail security feels when waiting to unlock the doors on Black Friday,  with thousands of customers pressing on the doors to grab those two televisions sets they advertised at the low low price of a dollar three ninety eight! Anxiously waiting, Bill turns to me and says "I hope I don't Shit myself"!  Yo, Mike!  We have a clean up on aisle three!

Finally the bathroom door opens, and Bill and I rush in,  he is turning to back up to the toilet, while trying to pull his pants down at the same time.  I am trying to undo his belt at the same time,  Now this is where I insert the very important aspect of dressing your charge appropriately.  I realize we are going to visit family on Thanksgiving, but there is no reason to dress him up in clothes that require allot of tying, buckling, snapping, and zipping.  Try aiming for the quick, slip on and slip off, easy in, easy out, bada bing, bada boom!  That is what I get for listening to the voices in my wife's head, I knew better and went against my own instincts.

With pants around his ankles and diaper almost to his knees, still standing, he announced it was too late,  and he was right.  With explosive diarrhea, he messed inside his diaper, outside his diaper, inside his pants,  outside his pants, all over his legs, shoes, and socks.  Diarrhea on the toilet seat, under the toilet seat, outside the toilet bowl and on the floor, yet NONE made it into the bowl.  Then he did what he went into the restroom to do, he sat down, right on the toilet seat, that was covered in poo.   Did I wish everyone a Happy Thanksgiving yet?  I proceeded to try to remove Bills shoes, pants and diaper so I could proceed with the clean-up on aisle three. 

Forty Five minutes later after washing his pants in the bathroom sink, changing his diaper, cleaning him up with single ply Scott toilet tissue (a whole lot of it).  I also cleaned the bathroom of most of the mess, the best I could.  Bill was highly embarrassed and upset, he apologized to me several times,  the first time he apologized I said "that's OK, this is why I get paid the big bucks"!  He laughed and said "well even if you were getting paid, no amount of money is worth this"!  My reply "it's a Shitty job, but someone has to do it."  My wife who anxiously awaited our exit from the restroom managed to escort her father to the car with the utmost dignity, and grace they could muster.  I finished cleaning what I could, and wish to take this opportunity to give a shout-out to the gentlemen of the Shell station off of Arkadelphia Road for the use of their restroom, and Happy Thanksgiving.

Although we had the forethought to bring a clean diaper, we did not bring an extra set of clothes.  We then had to return home about 30 minutes away, so Bill could shower and change clothes.  We then proceeded to our second destination that went off without a hitch, however when we arrived back home, my wife did have to coax Bill out of the car because he said he did not live here, and would just wait in the car for us.  He has been living with us for 10 months now, once inside he stated the house was too small for all four of us to live in.  We have 6 people, 4 bedrooms, and 1 of the six goes to college, we gave her room to Bill.  

We did not get to see my family again this Thanksgiving, but did manage to make it to my wife's family gathering.  Although I did not get to visit my family I did have a Happy Thanksgiving and am very Thankful for all that God has blessed me with.  I am thankful for my family, I am thankful for all of my cousins safely returning home from war both from Iraq, and Afghanistan.  I am thankful for my wife, children, and father-in-law as well as the rest of my wife's family that I was able to visit today.  I am also thankful for all of you and hope you continue to read my blog and ask others to visit as well. 

I hope that you gather some helpful insights from this article so that you can plan for any unfortunate events.  Plan for the worst, Hope for the Best, and hopefully you will never be disappointed.  Because Shit Happens!

Alzheimer's Disease and Wandering

Alzheimer's Disease and Wandering:

Here is an outstanding article written by Bob DeMarco from the Alzheimers Reading Room

 "_____________________________________


Wandering is among the most unsettling and even terrifying behaviors people with Alzheimer's disease display. Often poorly clad, they leave safety at random hours and strike out into unknown territory, for no apparent reason. But this seemingly aimless activity usually does have a reason. It's often an attempt to communicate after language skills have been lost.
_____________________________________"

What's it like, living with Alzheimer's?

Well today is Saturday and we are having some nice weather, so here I am "Inside" writing in the blog!  If it was cold and raining outside, I would want to be outside cutting grass.  Is that what Alzheimer's like?  Your body is doing one thing, while your brain is trying to do something else?  Or wanting to do one thing, while your actually doing another?  I think it is both Yes, and No!  No, it is not quite like that, but Yes, it is almost as simple as that.  OK Brian, you got me confused!  Speak English, or Earthling, or something else we can understand.

Living with someone that has Dementia/Alzheimer's is very much like living with a normal person for the better part of the day.  In the respect that there is normal behavior, and normal conversation for a good portion of the day.  Then there is some off the wall, abnormal, unbelievable, confusing behavior.  Which is what I mean by wanting to physically do something, while mentaly doing something else. 

• Bill will put a blanket down on the couch or bed, lie down on top of it, then try to cover up with it while its trapped underneath him.
• I will tell Bill to take off his shirt so I can shave him,  I turn around, and he will be completely naked.
• I will tell Bill that we will drive into town "Tomorrow" and do something, he will go climb into the truck right then.
• He "Dips Snuff"  he will attempt to take the lid off the can, but have it upside down.  I will say Bill turn it over.  He will spin it round and round in his hand.  I will have to explain very carefully.  "Bill, stop!  now flip the can upside down"  He will then flip it to where the lid is on top.
• We will walk somewhere, and I will lead him by the arm telling him to turn left,  he will turn to the right, and no matter how hard I pull him to the left, and keep saying "this way Bill, this way."  He will keep trying his hardest to pull and turn the opposite way. 
• I put a plate of food down in front of him, he will look at my plate clear across the table, reach across the table and grab my plate.  "I say no, your plate is in front of you!"  He will look down at his plate say "Oh", then look back up at me, look across the table, lean across the table and grab my plate again.
• On a daily basis he will do one of the following, he will get up to go pee, open the front door, and pee on the porch.  Get up to go spit outside, and spit in the hallway leading to the bedrooms.  He will get up to go out on the front porch and end up in his bedroom wondering where the front door is.  I have caught him several times trying to climb out of his bedroom window while trying to get to the front porch on the other side of the house.

The above mentioned behavior I expect to happen on any given day, at any given time.  This behavior although cause for some concern is less dangerous than the following situations.  The occurences that arrive unexpectedly are those of his Hallucinations, and delusional behavior.  That behavior, atleast with Bill is where he is partially in my reality, where he knows who I am and where we are, and partially in another reality where he believes other people are in the room with us, or he is doing something that we are not really doing.   We may be having a conversation and he will think someone else is in the room with us, and start talking to them or about them.  He will bring up something that is going on only in his mind, yet I have no clue what he is refering to. 

Well this confuses me, my first reaction is to say no, or to state that no one is here, or no that did not happen.  That may or may not start an argument, or frighten Bill.  So I pretend that his reality is real to me as well, and attempt to steer him away from the Hallucinations, or delusions by changing the subject, or distracting his attention.   One day he started having a discussion with one of his sons that in my reality was not in our house.  His son was ignoring him and would not answer him,  Bill started getting madder and madder.  He finally got up looked at me, and said come on, we're leaving, If the S.O.B. will not talk to me, then there is no use staying here.  Bill then leaves the house and climbs into my truck.  Now the problem is, we are at my house and his son was 30 miles away in his own home.  So, I get into the truck, drive Bill down to the local gas station, Quick-It # 8 buy him a candy bar and drink, and go right back home to our house.  By the time we made it home, he was back to my reality and had forgotten all about his son ignoring him.  We drove two and a half miles down the road, two and a half back,
10 minutes had passed.   It does not take much to distract, and ease the tension, all you need to do is change the environment long enough for them to calm down, and step back into your reality.

A hallucination is a false perception of objects or events involving the senses. When individuals with Alzheimer’s disease have a hallucination, they see, hear, smell, taste or feel something that isn’t there.

Delusional disorder, previously called paranoid disorder, is a type of serious mental illness called a "psychosis" in which a person cannot tell what is real from what is imagined. The main feature of this disorder is the presence of delusions, which are unshakable beliefs in something untrue. People with delusional disorder experience non-bizarre delusions, which involve situations that could occur in real life, such as being followed, poisoned, deceived, conspired against, or loved from a distance. These delusions usually involve the misinterpretation of perceptions or experiences. In reality, however, the situations are either not true at all or highly exaggerated.

When people suffering from Alzheimer's suffer Hallucinations, or Delusions they may think that you are a stranger trying to cause them harm, when in fact you are a loved one, trying to help them.  This is what often causes Alzheimer sufferers to get violent and lash out.  Hallucinations and delusions, are often what causes Alzheimer sufferers to wonder off.  They think they are somewhere other than where they really are, or they think they are going towards a destination that only exist in their reality.    The situations that stem from hallucinations and delusions are very dangerous not only to the Alzheimer victim, but to the Caregiver as well.

In Bill's Company

It seems like everyday Bill has an Alzheimer's moment, some funny, some sad, but all noteworthy. Problem is, that I seem to forget them from day to day, which makes it hard for me to dedicate a whole entry for it. So enjoy what tidbits I do write, and please feel free to comment and add to them.

Today Bill was sitting on the love seat on one end, and he had a pillow and blanket on the other end. He kept lifting up the pillow, putting it down, lifting up the blanket and put it down. He was obviously looking for something, I sat and watched him for approximately 10 minutes. He just kept repeating the same thing, lifting up the pillow, looking under it, picking up the blanket looking under it, rinse and repeat.

I finally asked, "Bill what are you looking for"? Well, I had a can I thought I put here, and I can't find it. "What was in that can Bill"? Well, I had some dirt and other stuff I had put in there, at least I thought I did. "What was the other stuff that was in the can besides dirt"? I asked. Just some dust and stuff I picked up and put in there, I think, but now I am not so sure!

Of course there was no can of dirt or anything. At least not in my reality.

Here we are 10 minutes later and Bill ask me. "Tell me one thing. What are we doing here"? Well, right now we are watching TV, I replied. "Besides that, what are we doing here"? Well we live here Bill. He does his nervous laugh and says "Well, maybe you do, but I don't live here." Now How can I argue with that? He has been living here for the better part of a year now, and I still have to remind him once a day that this is where he lives.